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CLL Support Association
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Do most people on Imbruvica have to take allopurinol also?

I have been on IB for almost 3 months and I really don’t like taking allopurinol and I’m wondering how long do most people have to take it and do most docs prescribe that with the IB. My neighbor is taking a IB too but he doesn’t take allopurinol. In other places I have read that tumor lysis is very rare with IB. I don’t like it because it makes me so tired.

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In several of my treatments allopurinol was used for the first few weeks of treatment when there was a possibility of a sudden die off of CLL cells. Once the rate of decrease in ALC was established my doctor stopped it.

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My unmutated Trisomy 12 tends to react to treatment much faster than other patients. Out of 6 rounds of treatment I don't recall taking Allopurinol for more than one week before and month after treatment started.

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You should relay the exact same information from your post to your doctor, and if your doctor is not an experienced CLL expert, get a second opinion yourself or encourage your doctor to consult with a CLL expert.

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Len

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I have been on Imbruvica 7 months and I was prescribed Allopurinol for the first 4 months only and my WBC and ALC are trending down slowly now so my doctor said I didn't need it any longer.

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I am also unmutated and trisomy 12.

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I'm taking allopurinol also taking Aciclovir and every Monday Wednesday and Friday I also have to take co-trimoxazole, needless to say I rattle when I walk lol

John

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Hi. They gave me acyclovir and I keep it on hand in case I would need it. I have had shingles 4 times in my life. Only once in the 15 years I’ve had CLL. I Would get shingles in my 30s. I know they say that virus stays hidden in your spinal cord and I wonder if the reason I always got them was because I had a problem with bone spurs on my spine and when I had those removed (that’s when found CLL)but I don’t have shingles as much now so I’m wondering if that chronic irritation in my spinal cord could’ve been why I had them so much when I was so younger.

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What is your uric acid level? Without knowing no way to give clear info. If it's within normal limits. if it is you could probably go off it-as long as you keep getting periodic uric level checks. I've been on Imbruvica 3 months and have been on allopurinol from 2 weeks prior to starting Imbruvica.

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Usually 4.1 to 4.7

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now this is with taking the allopurinol. you might ask your doctor to go from 200mg to 100 mg a day and see if your level is maintained. then go to a half etc until off

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Narl,

I started Ibrutinib 3 months ago and no one ever mentioned allopurinol...ever....isn't that for gout or something?

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Allopurinol is used for gout, but also used to protect against tumour lysis syndrome (TLS). When there is a high tumour burden and when powerful drugs (Venetoclax in particular, but also Gazyva and FCR and perhaps even BR) are capable of causing a massive die off of CLL cells, the kidneys and other organs can be overwhelmed by the release of intracellular proteins and salts. Potassium released from dying cells can and has caused heart attacks. en.wikipedia.org/wiki/Tumor... So allopurinol is more likely to be used in the initial treatment stages and may not be used when the patient has a small tumour burden, low lymphocyte count, spleen and nodes not all that swollen.

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It could be that because you didnt have a high tumour load and significant lymphadenopathy on starting Ibrutinib that allopurinol wasn’t required in your case Scott. And I now see Neil has already said that! 😉

My ALC was very high, hefty spleen and I was one big node so allopurinol was required to protect against tumour lysis when the baddies came flying out!

Newdawn

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Right, mine were just not that high (45K max) before IB...and last two months around 75K....

How are you doing NewDawn....we started the IB about the same time....and I know it has been harder for you. I hope things settle down for you and I totally want to hear about the Ventoclax and how you do.

I think you UK people are more advanced with the Ventoclax than here in the US....when I asked my doctor about it he seemed surprised I even heard about it...and they told me they only have two people using it.....

I been reading about the chemistry of it (OK, looking at the words and not understanding much of it might be more accurate than reading) but damn, that is advanced technology and chemistry.....

Scott

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I’m going into the Venetoclax intro and ramp up armed with a lot of experiential information from this site Scott and am concerned about the cumulative impact on my neutrophils and platelets which are thankfully decent to start with. I’m not sure my trial centre has had many I&V candidates which may explain why the Consultant forgot to put me on allopurinol when he saw me this Thursday.

Having pre-existing arthritis, I knew the Ibrutinib was going to have a field day and it hasn’t disappointed! Today I’m rather like one of those Star Trek colonists with interesting body patterns only mine are from petechiae! Who needs a tattooist! 😄 I’ve also got a line of bruises running down the length of one arm and still can’t get my wedding ring on my swollen finger. Plus I have a latex intolerance so have a sore from an allergic reaction to the tape used around the IV cannula. But I’m no quitter! 😉

Regards,

Newdawn

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I've always thought that this was a website FOR people who aren't quitters!

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I will echo the same. I was given allopurinol both when starting Ibrutinib and later when starting Venetoclax. But I went off of it when my uric acid levels became neared normal. I then substituted unsweetened cherry juice as an anti-inflammatory. It is less effective maybe, but also more gentle if you do not need more aggressive intervention.

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Hi thank you all. My ALC was 321 but is now 130. My wbc was 320 now is 140. I didn’t have any bulky lymph nodes I think he was just doing it because of those high numbers. I have had CLL since 2005 This is my first time for treatment. I felt better before I started on treatment, I’ve been nothing but tired since then. I am just thinking of laying off the allopurinol a few days see if it’s what making me tired I know that it is making me dehydrated. I wake up about every two hours in the night So dried out have to get up and drink water. I’m pretty sure that’s the medicine causing it because I didn’t have it for a couple of days when I didn’t have my refill and I didn’t do that as much. I am a little worried about my kidneys because my last blood test said my eGFR was 52 and my creatinine was eight points over the range. My uric acid is usually 4.1-4.7 area. My potassium is 3.8. I don’t think my doctor is an expert but I go to NCI Cancer Center at the University of Kansas so I don’t know if that really means anything or not. KU has had its ups and downs in regards to quality over the 45 yrs I have gone there. I am 61.

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It is funny you said this...my last blood test showed elevated GFR and Creatiine...not super high....but outside normal range.....first time those were up.

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I just read on a kidney site that it will go up if you’re dehydrated so I’m wondering if that’s what it is. I know I’m dehydrated I just feel like I’m always thirsty since taking this medicine. I wake up several times in the night just feeling like I have no moisture at all in my body

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I feel the exact opposite...I NEVER feel thirsty since starting IB and have to force myself to drink....I find myself going 4-6 hours without drinking anything unless I have water/gatoraide/7-Up placed all over the place to remind me.....

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Snap Scott.

Colette 💧 🤔

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Hi Colette....how is my number #1 CLL Girlfriend today?

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Thank you Scott,

All the better from hearing from you.

Olga’s turn tomorrow x x x

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You don't say if you've spoken with your consultant about this. If not, might be a good idea to say how much you want to come off it and ask if there are reasons why you've got to be taking it at this stage. Perhaps your lab results indicate you need it at this stage and only a specialist with access to your lab results since beginning IB can explain to you.

If your current doctor is prescribing it because he sees it as general protocol with IB treatment you need a second opinion from a good CLL Specialist. You'll have read previous good replies here that explain why Allopurinol is used with Ibrutinib and that it can be essential. I was prescribed it when beginning IB, but it made me very ill and my doctor immediately took me off the Allopurinol. I was advised to drink lots of water and my blood was monitored. In my case, this was the correct procedure, but only your Doctor with access to your history and all lab work can decide.

You have my sympathy as nothing in my life as ever made me as ill as the Allopurinol did. I only took it once, before starting Ibrutinib for the first time. I mention this as want to make clear that there was no reaction going on between the two medications. You mention feeling tired on the Allopurinol... I put off starting Ibrutinib for two days until I recovered from the weakness I felt recovering from taking one dose of Allopurinol.

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I am in a trial & will have my 3rd infusion (gayzva) next Wednesday. I also take 420mg of Ibrutinib daily—-in my 11th day. I asked my hematologist at Mayo’s how long I would be on Allopurinol. Depends on your electrolytes. If the urine acid remains in normal range, she said she may start weaning me off it after a month. She also said that Zovirax I am taking, that I would stay on it as long as I was on Ibrutinib to protect against viral infections, particularly Shingles.

Varney

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I did FCR chemo for 3 months. Was put on Allopurinol during chemo treatment and about 2 months after I reached remission my oncologist took me off of it. It didn't make me tired or fatigued. Are you sure it's the Allopurinol ? I would discuss stopping it with your oncologist. It might do more harm not being on it. Other meds can bring on fatigue. 💕

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If it’s not that it would have to be the IB because the only other medicine I take is my blood pressure medicine which I’ve been taking for about 12 or 13 years. I thought also it could be that since I’ve been taking that medicine my heart rate is always in the 50s, 60s or low 70s and I’m used to my heart rate being in the 90s to 110 because I have a ventricular arrhythmia that keeps my heart rate kind of high but since I’ve been on those medicines my heart rate is low and my oxygen is low too 93-95. but they just kind of poo poo that off like it’s no big deal because a lot of people that’s their normal heart rate so dr says its a good rate but my point is it’s not my normal heart rate.

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I took allopurinol for I think 2 weeks before I started Imbruvica. Never took it after I started Imbruvica though.

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I took one allopurinol and came down with severe allergic reaction. Had to go to ER twice. I had to go on steriods for a month, starting at 40 mg and tapering down. I started on Ibutrinib 10 days ago on 140 mg daily. My WBC was 50,000, then went to 100,000 due to reaction and steriods, and now it is at 150,000. I actually feel better than I have in a long time (crossing fingers). I am really drinking as much water as I can possibly get down me. My uric acid was at 7.3, which is a little high. I'm supposed to get checked again tomorrow.

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I know most people say they’re white count goes up after they start taking it mine didn’t go up at all. I guess everybody is just different

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It is so normal for your WBC number to go up when starting Ibrutinib....double or even triple....then start to come down slowly

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Strange, mine just went down, not up at all.

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I took allopurinol for about a month I think, perhaps less, when I first began my ibrutinib treatment. Been on it for over 3 years now, and not had to take it again. They test your various levels often, and would know if it's needed again. BTW, I now show no signs of CLL other than a slightly elevated mon% (?). Only side effects are brittle nails (both fingers and toe) and a tendency to bruise easily. I'm grateful.

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That’s good. The doctor kept saying I was going to feel better so I was very optimistic but I don’t feel better but I do think it was the allopurinol. I have laid off of it the last two days and I feel better I’ll just take a break from it on my own

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No, but with a high tumor burden it is not a bad idea for the first few months.

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I am not on treatment yet but I have been on allopurinol ( 200 mg. ) for a year for gout. I haven't noticed any side effects at all. scaler59

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narl,

Allopurinol aids in removing uric acid in the blood.

Your Oncologist should be monitoring uric levels in your blood. It is common to stop taking allopurinol after initial treatment lowers WBC to within acceptable range and if uric levels are clear.

If your levels are acceptable, you are not at risk for tumorlysis, and you are not prone to gout, then what other reason is there to take allopurinol?

JM

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Thank you, thats the way I see it too, I am not stupid about my health and I just feel through my medical and family medical experiences, they have a protocol they follow, and everyone gets it whether they need it or not. I have been studying online about CLL since 2005 when actually diagnosed, and my mom had it too so have been aware of it since 1982, even though there was no info back then as it really was not a disease studied much till late 80's. Its hard to take a medicine that makes you feel worse than the disease. And it could be the IB, ??? but I am suspecting the allopurinol more. I do know that they are being cautious also, but that is bad thing about teaching hospitals too, sometimes they are all in the room paying more attention to each other than the patient.

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I was writing in the context of what I have seen from some physicians. They are human and at times they are overloaded. This is when it is fair to put them in check to get the better of their care.

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I'm starting Ibrutinib tomorrow and I've been given a prescription for allopurinol to take with the Ibrutinib for two weeks. Really nervous especially when you read all the possible side effects.

Miller1960

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Hope day 1 is uneventful!

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Hi, I started on alloplurinol about fifteen to twenty years ago after a bout of gout generally due to too much seafood with full bodied red wine followed by vintage Port. When I started on Ibrutinib I was also given alloplurinol, so that is twice the dose. I have been on Ibrutinib seven years and reduced the alloplurinol after two years but still take one dose, probably for the gout but since diagnosis I have left alcohol to birthdays and other such events meaning that I can be very selective on my occasional visit to Berry & Rudd with my choice of Pomerol and Margeaux .

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I have been on 420 mg Imbruvica for three months. Allopurinol has never been discussed or prescribed by my oncologist. I am certainly not an expert but, like many on this site, have read a great deal about Imbruvica and yet haven't even heard of Allopurinol. Maybe I have some things to learn. Maybe dumb luck, but my blood counts (WBC, RBC, Hemiglobin, platelets) started to improve after two months and more improvement in the third month). I am a happy, grateful person.

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He said because my wbc was over 300,000 was why I was taking it, but now it is 120,000 so I hope i can get off. My neighbor just got on it too but they don't give him allopurinol either, his WBC is in 50,000 but he has a lot of lymph node involvement, which I don't have, mine is more in the blood itself.

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narl, you have been given excellent advice on why allopurinol is prescribed, and how you should seek a further medical opinion. It doesn't seem to 'agree with you' so unless you absolutely need it, maybe you can come off - or at least, reduce the dose.

More seriously, a couple of you have mentioned 'allergic reaction' and being 'very ill'... a small number of us react very badly to allopurinol - I lost consciousness for the only time in my life (apart from general anaesthetic) and was out for 20min - had to go to A&E overnight - anyone prescribed this medication should be made aware that it can be very dangerous, but it was my experience that the doctors simply didn't know about this serious, but rare, reaction.

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